Blog Post

An Angelman Swims with Kenny

I decided to swim around the Caribbean for a little while, the water is the most amazing color that I have ever seen. One day as I was swimming I noticed a remarkable little boy. His name was Ethan and he had a smile that warmed my heart. He was standing in water that was just past his chest. He was moving his arms back and forth and watching the waves and bubbles that his hands made when they skimmed over the water. The sun was reflecting off the water and lit up his smiling face. He had such a gentle smile that I decided to go over for a visit.

“Hello, my name is Kenny,” I said, after all, it is always good to introduce yourself when meeting a new person.

“I’m Ethan,” said Ethan, who was smiling an even bigger smile than before. “I have never met a talking dolphin before.”

“That’s ok,” I said, “I have never met an Ethan before!”

That made Ethan laugh. “I am Ethan, not an Ethan!” he said still laughing. He had an infectious laugh to go with his wonderful smile.

“What are you doing Ethan?” I asked. He moved his hands over the water, feeling the waves on his palms.

“I am watching the waves and bubbles. The water is my favorite thing in the world. It is so much fun to watch. It is so blue, that is my favorite color. Nothing is better than water!” Ethan said.

“You won’t get an argument from me. I love the water too! I live in it!” I said.

“I didn’t want to argue with you.” Ethan was still smiling.

“I meant that I love the water too. I was just agreeing with you.”

“Oh, ok, no problem.” Said Ethan. He still was staring at the water, he seemed mesmerized by it. I completely understood because there is nothing more beautiful for me to look at than waves moving in the sunlight.

“So what do you love so much about the water Ethan?” I asked.

“Well,” Ethan smiled “it feels good to be in it. It is the most beautiful color in the world. Water is soft and warm and gentle. I don’t think that it ever stops moving. It’s shiny and makes the sun brighter.”

“I totally agree!” I said. “Everything is more beautiful in the water.”

Ethan moved his hands over the waves and giggled when a wave touched his chin. He thought for a moment then he said “I wish I were a dolphin. If I were a dolphin I would never have to leave the water. I could stay here all day and make whirlpools and bubbles and waves. I could sleep in the water! I bet that is amazing!”

“It is pretty great to live in the water,” I said.

“If I lived in the water then I could go anywhere. That must be so nice!”

“I have to admit, it is fun. I can just go anywhere that I want to. All I have to do is swim there.”

“Where do you go?” Ethan asked.

Well, I can go just about anywhere. I have spent most of my life on the coast of California. Though I have started to travel a bit. I had never seen the Caribbean, so, I decided to visit. I really love it here!” I said.

“Me too. Everything is so beautiful, especially the water. I never saw such blue water until I came here!” Ethan said.

“Where do you live?” I asked. I hoped that he was not lost, he was such a kind and gentle soul.

“We live over there in that beautiful blue house.” Ethan pointed to a bright blue house just on the shore. “I live there with my parents and my brother.”

Sure enough, I noticed someone was coming toward us. It was Ethan’s mom.

“Ethan my angel, what are you up to?” she asked.

“Just talking to this little dolphin!” Ethan said.

“That is wonderful,” she said, “but it’s time for you to take a break. Let’s go in and get a snack and then you can come back and play with you little dolphin friend later on.”

“Can’t I stay a little while longer?” Ethan asked his mom.

“Your fingers are getting pruney, Ethan. You can come back in a little while. I bet your friend will wait for you.”

“I certainly will!” I told Ethan.

As Ethan headed up to the beautiful blue house, I chatted with his Mom for a little while.

“Ethan is such a sweet person. I love how he always smiles,” I said.

“Yes, he is a really sweet boy,” said his Mom. “Ethan has Angelman Syndrome. It causes him to have a lot of challenges in his life. But the water makes him so happy that we moved here to be close to the most perfect water we had ever seen.”

“I think that is so wonderful. What is Angelman Syndrome?“ I had never heard of this.

“It is kind of like autism or Fragile X syndrome. Sometimes Ethan has sensory needs, but the water always seems to calm him and make him feel better. He is a happy and kind little boy and he really does smile a lot.” Ethan’s Mom told me.

“Is that why you call him your angel?” I asked.

“No,” she said laughing, “I never thought of it like that. We have called him our angel since he was born. He was so sweet and smiling, even as a baby.”

“He is lucky to be loved so much,” I said.

“We are lucky to be loved so much by Ethan!” his mom smiled.

I hung out with Ethan and his mom for a few days. We had lots of fun and watched the sun on the waves together. I would jump out of the water, and create a big splash with lots of bubbles and waves when I would land, Ethan loved that! When it was time for me to explore some more, I promised to come back for another visit with my new angel friend. He was truly one with the water!

A video posted by One with the Water® (@onewiththewater) on Sep 24, 2016 at 1:59pm PDT

Angelman Syndrome is named for the British pediatrician Harry Angelman who was the first to describe the traits in 1965. Angelman Syndrome is a genetic disorder that can cause intellectual and developmental delays. Other characteristics that people who are diagnosed with Angelman Syndrome might possess can include sleep disorders, motor skill challenges, and seizure disorders. Angelman Syndrome is often misdiagnosed as Autism or Fragile X due to the similar traits that they share including sensory needs, difficulty with expressive language and learning disabilities. Angelman Syndrome is passed to the child from the mother. People with Angelman Syndrome, or Angels as they are sometimes referred to by family and friends, are also typically very attracted to the water. They are said to be kind, gentle people with a happy appearance due to smiling. As with any diagnosis or condition, all people with Angelman Syndrome are unique and individual human beings, with their own interests, likes, dislikes and passions.

For more information about Angelman Syndrome, please follow the link to visit the Angelman Syndrome Foundation website. https://www.angelman.org/

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